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Reflecting Interdependence:
Disability, Parliament, Government and the Community

1. Our approach and achievements

When the Sub-Committee on the Status of Persons with Disabilities was established in December 1998, we, the members, felt that we did not want to report to Parliament in the foreseeable future. We planned an agenda that focussed on practical measures and actions that we could take which would have a positive impact on the lives of Canadians with disabilities.

We began with the view that enough reports and recommendations on persons with disabilities had been prepared and tabled in the House of Commons. We believed that these various reports set out a blueprint for what needs to be done. And people with disabilities had made us aware that they had reached the limit of their patience with consultations - they felt that they had given their views on any subject of importance to them. Instead of re-inventing the wheel and preparing studies that merely repeated the findings of our predecessors, we decided to investigate the fate of the mountain of reports and recommendations of the recent past and to establish where disability issues stood on the current government agenda.

Previous reports on the tax system, transportation, business and technology and the review of legislation, have given clear indications of what ought to be addressed (if not how to address it), yet they seem to have landed in limbo. The report of the Taskforce on Disability Issues (the Scott Taskforce) which was commissioned by the government has not provoked a comprehensive response to the blueprint that it presented. As we listened to the expressions of support from the eleven ministers that appeared before us, we constantly confronted the question: Why have these reports collected dust? Will this be the fate of any recommendations that we produce?

Part of our mandate involves monitoring the nature of policy developments and government activities, as well as the community's concerns. We started our work by trying to get a sense of what was going on, what was not going on, and why. In conducting our monitoring role, we held meetings that gave us the opportunity to engage in discussions with policy experts, a large number of cabinet ministers responsible for disability-related issues and finally bring together individuals from the disability community in a large public forum. We hope that we have already contributed to developing solutions and during our short existence, have already produced some concrete results.

We have:

a. Identified some important challenges:

Our roundtables with various public policy and disability policy experts led us to conclude that disability issues have entered a critical period. The federal government must learn how to manage horizontal issues like disability. New federal/provincial arrangements, the Social Union Framework Agreement, need to be analyzed and acted upon so that people with disabilities can achieve their full citizenship. The Canadian public needs to be educated or disability issues will fall off the public, and political, agenda.

b. Helped to ensure that a post-censal survey on people with disabilities will take place in 2001.

We recommended to relevant ministers that they provide funds for a post-censal survey for persons with disabilities, the Health and Activity Limitation Survey (HALS), in 2001. The Minister of Human Resources Development subsequently told us that he would make a commitment to begin the preliminary work for the next HALS. This means that policies and programs in the future will be informed by solid data about the actual life patterns of people with disabilities.

c. Provided a much-needed forum that brought all the stakeholders together.

On 6 May we held a public forum with members of the disability community from across the country, the provincial premiers' advisory councils, federal and provincial public servants, and individuals from labour, business, children's and seniors' organizations. We heard about outcomes, we heard about some recent frameworks for policies. But we also heard a call for action and results and frustration that disability issues seem trapped in a circle.

d. Raised the profile of disability on Parliament Hill.

On 5 May, we sponsored a showcase on disability-related technology that brought together firms from across the country to display their achievements to parliamentarians and staff.

e. Questioned ministers about how their departmental mandates are taking disability into account.

During the past five months, we have heard from 11 ministers. They all expressed a commitment to incorporating disability issues into their mandates and activities.

2. This Report

We decided to prepare this report because we identified a very troubling paradox: Everyone agrees that it is time for action but concrete initiatives by the federal government are difficult, if not impossible, to find.

As the ministers outlined their departmental activities, we could not but notice the uneven understanding and uncoordinated actions undertaken by the various federal departments. Above all, we were struck by the fact that each department deals with the disability issues that fall within its mandate more or less in isolation from other federal organizations. Even within Human Resources Development, the department with a lead responsibility for disability issues, many decisions about the nature of initiatives such as the National Child Benefit, the Labour Market Agreements with the provinces, and funding for youth programs fail to take people with disabilities into account. When ministers and senior officials appeared, they could not provide us with any concrete figures for either the amount of money or the percentage of funding in their programs (particularly those for children, youth and health) that are used by people with disabilities.

We have concluded that it is time to study the process of how the federal government deals with disability issues. Since the recommendations of all these previous reports exist - and nothing has been done with most of them - we want to know why. Why do departments not collaborate with each other in developing effective policies and programs? Why is it so difficult for the current structures of government to deal with a horizontal issue, like disability? We feel that it is time to put in place the policies and practices that reflect the interdependence of disability policies across the federal government. Given our unique position as a link between the community, the political executive and the public service we intend to provide guidance on this file. We will monitor government activities and require that the federal government demonstrate some public accountability for its action (or inaction).

The Sub-Committee believes that the federal government should put in place policies and practices that will break down the barriers that separate policy development and program administration of the various departments that deal with disability issues. These new policies and practices should encourage the horizontal management of disability issues across all federal departments and agencies.

We realize that this conclusion is not new and sounds like a mere expression of good wishes. During the 34th Parliament and the 35th Parliament, almost every report that was tabled by Committees of the House of Commons as well as the report of the Taskforce on Disability Issues made a similar recommendation. Yet the barriers remain and important decisions that affect the daily lives of Canadians with disabilities are made without considering their needs.

The Taskforce on Disability Issues called for the establishment of a `disability lens' that would be applied to government activities. We repeat this conclusion and add our own comment that using a disability lens on government policies, programs and legislation could assist in breaking down the barriers between government departments and programs

The Sub-Committee believes that the federal government should put in place a disability lens. This means the federal government should ensure that:

• All legislation, policies, and programs should be designed from the outset to provide access for Canadians with disabilities.
• Where generic programs cannot fully incorporate the requirements for all persons with disabilities, the government should put in place additional means that provide access for Canadians with disabilities to these generic policies and programs.

3. The New Tools of Government: Disability and Outcomes

In terms of a disability lens, we agree with our predecessors about the `what,' but we have our own ideas about the `how'. In looking at the previous reports and trying to understand why they had so little impact, we noticed that they all adopted a `top down' approach to including disability in government policies and programs. They called for the Cabinet as a whole, or a minister responsible for disability issues or the Privy Council Office or other central agencies to force various federal departments and agencies to incorporate a disability lens in their policies and programs. Since the `top down' approach has obviously not provoked results, we feel that a `bottom-up' approach might work.

At our forum, people with disabilities told us very forcefully that the lack of a disability lens means that federal policies and programs have a different impact on Canadians with disabilities than on other Canadians. To analyze how to provoke action, we must deal with a series of broad questions:

• How are disability issues incorporated in the way that governments `do business,' that is in planning, implementing, reporting and evaluating their policies and programs?
• How can we even out or equalize the outcomes of government policies and programs for people with disabilities?
• Who decides which outcomes are desirable?
• What measures are put in place to determine whether these outcomes have been achieved?

Members of the disability community told us repeatedly that positive outcomes must be achieved horizontally across the federal government. Obviously, this is not news. Our forum allowed them to underscore old messages. They forcefully pointed out that Canadians cannot talk about employment for people with disabilities without also dealing with housing, transportation, disability supports and services, education and training and access to goods and services. These conclusions can equally be applied to children - the Sub-Committee on Children and Youth at Risk - is studying these issues.

But the forum also reinforced the message that for certain groups, children with disabilities, for example, the horizontal management of issues is even more important than for others. We recognize that the family unit (including the extended family) is the most sensitive, aware and caring support group for people with disabilities. Because of this, no policies or programs for children with disabilities (as with able-bodied children) can fail to recognize the importance of families and their impact on families. Government should assess this impact and support families and in turn, allow them - in practical ways - to maximize their capacity to support their children.

The failure to manage horizontally shows up most strongly in the outcomes experienced by Aboriginals with a disability. The compounded jurisdictional problems for these people provide a striking example of the consequences of inaction. The disability rate for Aboriginal people is from two to four times the national average. Many of these disabilities result from preventable accidents and a very large percentage are visual impairments.

We saw clear evidence that the federal government's current business planning process does not work for people with disabilities because it does not deal with horizontal issues. As Members of Parliament, we have had to answer constant questions about who gets - or does not get - disability pensions from the Canada Pension Plan. In its annual plans and priorities and its performance reports, the commitment of HRDC with regard to pensions seems clear enough. It is to provide secure income security programs for seniors, persons with disabilities and their children. And yet the measure of whether this has been achieved or not is based on how many telephone calls have been answered and how long it takes to process an application. To us, the indicator does not match the outcome. Busy signals are a management issue and unrelated to the security of a pension. Reports on departmental activities that talk about processing paper and telephone calls do not answer our questions.

We hope that including parliamentarians and the community in a dialogue about the identification and achievement of positive outcomes might diminish the discrepancy between what the government claims to be accomplishing and what parliamentarians and the community see as its actual accomplishments. At our forum, a representative of the disability community pointed out that throwing a pile of money into job training for people with disabilities in programs like the Opportunities Fund (an input), will result in producing a certain measurable number of people with disabilities who are ready for a job (an output). Outputs are easy for the bureaucrats to measure - they can justify additional funding for programs and jobs for program managers. But outputs neither indicate, nor measure, the quality of these jobs in the traditional sense or in the new world of work (an outcome). The disability community shares our belief that objectives of each policy and program should clearly fit in to the larger broad outcomes. Our fear is that outputs and the need to measure them are driving government programs. As a result, the programs have become more and more the creatures of the public service and less and less linked to the outcomes that the community and the politicians feel ought to be of primary concern.

It is obvious that on its own, no single federal department and no single minister (even a minister responsible for the status of persons with disabilities) can tear down the vertical barriers that exist between departments and achieve the broadly-based outcomes that people with disabilities want. The plethora of departments and agencies that deal with disability must work together towards common objectives and common outcomes. They must also measure progress in the same manner. Right now, it is impossible to get a complete picture of what the federal government is doing in the area of disability. The annual plans and priorities documents, as well as the performance reports that are released by the Treasury Board, are based on departmental structures and perpetuate the isolation chambers that have prevented cross departmental co-ordination and accountability. For horizontal issues like disability and children, which cut across many areas of federal responsibility, these documents are not at all useful for getting precise information about which departments have made commitments in the area of disability, what these commitments are, how they have changed, and how they are measured. Those who run these programs are, therefore, ultimately unaccountable for their failure to coordinate their activities to achieve cross-departmental outcomes and the gaps in their results commitments are difficult to identify.

The Sub-Committee believes that Treasury Board and/or Human Resources Development Canada should prepare a comprehensive annual performance report for federal activities in the area of disability that provides detailed information on outcomes, results commitments and performance indicators for all federal departments and agencies.

4. A Place for Parliament and the Community

Obviously, the next step would be to seize the opportunity to become more involved in using the new tools of government - particularly the planning aspects, the determination of outcomes and the way that progress toward them is measured. Too often these are dealt with behind closed doors as a dialogue primarily among public servants which discourages the participation of both the community and the politicians.

The selection of outcomes and the decisions about how they are measured are political acts and involve political choices. The clearest example of this is when citizens make their choice of outcomes in an election by casting their ballots in support of a political party and its platform. Similarly, politicians make choices about which outcomes they want when they support particular actions in caucus or in Parliament.

While these choices of outcomes are made in the partisan political arena, we feel that partisanship does not always have to take the front seat. Committees such as our own should be given the chance to bridge the gap between the community and the government by examining proposed outcomes and the way that they are to be implemented and measured. One way to do this would be to refer departmental business plans to parliamentary committees before the departments implement them. The new cross-cutting performance report that we proposed above could also be referred to our committee for study.

In addition, for a horizontal issue like disability, initiatives such as a federal disability strategy have their best chance for success if a committee, like ours, can involve the community in examining a draft strategy, testing the proposed outcomes, the political values that underlay them and measurements of progress (the performance indicators).

We realize that a more open approach that we are suggesting carries certain risks. But so does maintaining the status quo. For example, at our forum on 6 May, representatives of the disability community all supported a more open process that involved them. They emphasized that they, themselves, are a resource that is not being appropriately used. Because they felt that they were not fully involved in the preparation of the national strategy, they told us that they are preparing their own national disability strategy that they will present as an alternative to the strategy put together by the government.

By shutting out the community, the government risks provoking an unnecessary confrontation. We suspect that the government and the community - architects of the competing disability strategies - will now have to resist the temptation to dig in their heels and emphasize their differences rather than their common features. By being more open, giving this Sub-Committee a draft strategy, allowing us to seek community input and to make recommendations, the government could have bridged this gap and reduced or avoided the possibility of misunderstanding.

The Sub-Committee believes that before any decisions about outcomes, or outcome measures are made, parliamentary committees and the community should be involved in establishing both of these. This is particularly the case for horizontal issues like disability.

5. Disability and the Social Union

In the work of our Sub-Committee, we also tried to assess the possibilities for people with disabilities of another recent development in Canada - the Framework Agreement on the Social Union that was signed on 4 February 1999. Because people with disabilities - along with most Canadians - are not familiar with what it is, or what it may mean, we made the Social Union the focus of our forum on 6 May. We joined the participants at our forum in analyzing how the Social Union Agreement applies to disability issues and can ensure positive outcomes for people with disabilities.

The Social Union Framework Agreement represents the recognition by governments1 that they need to:

• Ensure adequate, predictable, sustainable funding to social programs;
• Modernize these programs to meet the needs of Canadians;
• Restore the public's confidence in government by involving citizens, acting transparently and being accountable;
• Better manage interdependence and put in place collaborative practices

The commitments made by the governments in the Agreement should give some hope to people with disabilities that governments across Canada share their principles for the development of social policy. The Agreement commits the governments to:

• Treat all Canadians with fairness and equity.
• Ensure access for all Canadians wherever they live or move in Canada to essential social programs and services of reasonable comparable quality.
• Provide appropriate assistance to those in need.
• Promote the full and active participation of all Canadians in Canada's social and economic life.

In agreeing to these principles, governments are echoing what people with disabilities have sought for years.

The Social Union Framework Agreement also commits the governments to remove barriers to mobility in Canada. These barriers, graphically described for us in our forum on 6 May, have had a disproportionate impact on people with disabilities who find that their access to essential supports and services (wheelchairs, attendant care, drugs and dietary supplements) disappears when they move from one province to another. The Framework Agreement opens the door to a supplementary agreement that would allow the transferal of disability supports from one jurisdiction to another. Part 5 of the Agreement provides for the use of the spending power to `support the delivery of social programs and services in order to promote equality of opportunity for mobility for all Canadians and to pursue Canada-wide objectives.'

In addition, the Social Union Agreement reinforces the arguments that we made in Section 3 of this report since governments have agreed to work transparently and in partnership with the population in setting outcomes, devising policies and programs and measuring whether these have succeeded. As we pointed out above, common outcomes and performance measures will ultimately lead to harmonization of policies and programs.

The Framework Agreement, however, also sets up some hurdles to a federal/provincial/ territorial collaborative approach to disability. Part 4 of the Agreement Working in Partnership for Canadians, provides for joint identification of priorities for collaborative action. Therefore, for disability to move easily onto the Social Union agenda, the two levels of government would have to identify it as a priority. Part 5 provides for use of the spending power to "support the delivery of social programs and services by provinces and territories in order to promote equality of opportunity for mobility for all Canadians and to pursue Canada-wide objectives" such as a national program of supports and services for people with disabilities. At the same time, new Canada-wide initiatives supported by transfers to the provinces and territories require the agreement of the majority of the provincial territorial governments. The Framework Agreement, nonetheless, provides for the federal government to continue to transfer funds directly to individuals and organizations. This may mean that the federal government could provide money directly to people with disabilities to achieve certain purposes (cover the additional cost of disability, for example, through the tax system).

Hopefully, the Social Union Agreement will live up to its promise that intergovernmental cooperation is not seen as an end in itself but as a means to develop better policies and programs. In the view of this Sub-Committee, the Social Union Agreement could create a context that facilitates progress and improvement in the lives of people with disabilities. Because the Agreement is a political document, it can be used to put pressure on governments to act. Any difficulties in applying the Social Union Agreement to concrete action on disability issues, therefore, will not arise as a result of the terms of the Agreement but rather because of disagreement at the political level.

One further concrete step in applying the Social Union Agreement to persons with disabilities occurred in October 1998 when the Federal/Provincial/Territorial Ministers Responsible for Social Services released, In Unison: A Canadian Approach to Disability Issues.2 This policy framework was developed - at the request of the First Ministers - to guide future government action in the area of disabilities and to reflect a common vision to promote greater equality and inclusion.

In Unison represents the first federal/provincial/territorial agreement in the area of disability that reflects a common vision of full citizenship translated into objectives and policy directions within three interrelated building blocks:

a. It recognizes the need for measures to address the additional costs of disability and the requirement for accommodation including access to supports; portability of supports and assistance in offsetting additional costs.

b. The document focuses on enhanced employability and measures to reduce reliance on income support; promoting access to training, increasing work-related supports; encouraging workplace/job accommodation; promoting work and volunteer opportunities.

c. The general direction for income support should be to reward effort but also to provide assistance for those unable to support themselves by removing disincentives to work; separating eligibility for disability supports from income programs; improving access and reducing duplication of income programs; ensuring availability of income support for short and long term periods.

We all must recognise that In Unison is the first set of objectives endorsed by federal and provincial governments that signed the document. That, in and of itself, represents progress. In Unison is valuable as a statement of philosophical principles with a few examples of where these have been put into practice.

The disability community has voiced concerns about the document. It does not provide any truly `new' or unique approach to disability. Overall, the document risks becoming too focussed on `how it does things' not on the results of what it proposes (i.e. outcomes). This is particularly obvious in the sketchy treatment of accountability. It is difficult to identify who will be accountable for what.

The task then, is to turn In Unison into a document that can be related to concrete outcomes, actions and activities at both the federal/provincial/territorial level and within the federal government itself. The time is ripe for moving forward. Some of the most important building blocks are already in place. In Unison itself represents a significant move toward achieving a federal/provincial/territorial agreement. The next step would be putting in place a federal/provincial/territorial sectoral agreement under the Social Union Framework in the area of disability with concrete objectives, outcomes and performance indicators.

This Sub-Committee believes that the federal government should approach the provincial/territorial governments with a proposal for a sectoral agreement in the area of disability under the Social Union Framework Agreement. We also believe that the federal government's proposal should focus on the provision of disability-related supports and services as a means of eliminating barriers to mobility for Canadians with disabilities.

6. Bringing it all Together

One of the major problems in implementing disability policies and programs is that no one has ever been clearly accountable for results. The participants in our forum on 6 May recommended that this Sub-Committee should be made a standing committee so that it would be a permanent source of advice to Parliament and the government and a means of bridging the gap between the government and the community. We strongly feel that Parliament ought to be an important part of any accountability mechanism that is put in place and should also be accountable for its own actions.

We believe that Parliament, and in particular the House of Commons, should move quickly to make its buildings, communications, and practices fully accessible to people with disabilities. We invite the Speaker of the House of Commons to consult with people with disabilities and with this Sub-Committee about the changes to practices, programs and policies that are required to achieve this goal.

The disability component of the mandate of the Standing Committee on Human Resources Development under the Standing Orders of the House of Commons has been delegated to this Sub-Committee for the balance of this session of Parliament. Our mandate according to the Standing Orders, (108[3][c]) includes:

proposing, promoting, monitoring and assessing of initiatives aimed at the integration and equality of disabled persons in all sectors of Canadian society.

Unfortunately, our existence as a temporary Sub-Committee lapses whenever Parliament prorogues or dissolves. There is no guarantee that our parent committee (Human Resources Development) will consistently exercise the disability-related part of its mandate.

We believe that the House of Commons should instruct the Standing Committee on Procedure and House Affairs to study changes to the Standing Order of the House of Commons that either create a Standing Committee on the Status of Persons with Disabilities (as existed during the 35th Parliament) or make this Sub-Committee a permanent Sub-Committee of the Standing Committee on Human Resources Development, with the current disability-related mandate of that Standing Committee. In addition, the Standing Committee or the permanent Sub-Committee should have the power to "study and report on all matters related to the mandate, management and operation of the department or departments of government that carry out activities relevant to the Status of Persons with Disabilities." The mandate should specifically refer to the Standing Committee or permanent Sub-Committee the power to study and report on:

• the statute law relating to these departments and agencies;
• the program and policy objectives of the departments and their effectiveness in meeting them;
• the immediate, medium and long-term expenditure plans and the effectiveness of implementation of these plans;
• an analysis of the relative success of the departments, by comparing the results obtained to the objectives;
• other matters, relating to the mandate, management, organization or operation of the departments.

The Standing Committee or permanent Sub-Committee should also have the powers currently contained in the House of Commons Standing Orders, section 108(1)(a).

Parliamentary committees, however, can only do part of the job. Ultimately, we recognize that the Minister of Human Resources Development remains the lead minister for disability issues. We hope that we can be of use in promoting action on the disability file at the federal level. The Minister's job is a difficult one - lead ministers cannot force action. But we feel that the approach that we have outlined above should assist him.

We believe that the lead Minister on disability issues, the Minister of Human Resources Development, should create a consolidated responsibility centre for disability issues within his own department. This responsibility centre should have a clear mandate, authority and resources to act in both the policy and program areas. It should be headed by a senior executive who reports directly to the Deputy Minister of Human Resources Development.

7. Our Next Steps

At our future meetings we will be looking at precise subjects that we can study. This report contains several that we will consider.

Our Sub-Committee might usefully spend some time studying a disability lens. What is it? How can it be concretely applied? Can we develop an efficient method of applying it? How can we measure its usefulness? Is it a realistic tool to use in the current environment? Can `gender based analysis' that is applied to women's issues be used as a model? Has gender-based analysis made a concrete difference for women in policies and programs?

This Sub-Committee could respond to the challenge that we were given by the Minister of Finance when he appeared before us on 29 April. He asked for our guidance in answering certain questions as we move from `what we have now' to `what we need.' He put a series of questions to us.

1. What policy measures are most appropriate for action at the federal level?

2. How can we best ensure that federal measures complement provincial and territorial programs rather than merely displacing them?

3. What kinds of assistance can be effectively delivered through the tax system and what kinds need more direct and frequent contact than the tax system provides?

4. How can we design measures that appropriately reflect the great variety of disabilities and disability-related costs?

5. Should we focus on reimbursements for actual disability-related costs, such as under the medical expense tax credit? Or should we provide straight income assistance to those with disabilities such as under the disability tax credit?

We also believe that it is important to initiate some work on different systems of income support. One of these would be looking at ways to use the tax system to assist parents to prepare for the future of their children with disabilities. Another would be to examine the Canada Pension Plan - Disability, particularly the way it assists older workers who become disabled. We have become acutely aware that this plan was introduced in 1966 and that its basic rationale and structure have not been modernized. During the past 33 years, however, there have been significant changes in society and in medical and rehabilitation technologies. The nature of the `disabled' population has changed and today, even extremely severe handicaps do not necessarily mean unemployability in the way that the drafters of the Canada Pension Plan believed.

Whatever we do, however, we will proceed in the spirit of partnership with the community. Our forum showed us the need to validate the contribution of the community to the development of public policy. While we know that the disability community is skeptical of consultations, we still believe that appropriate dialogue with the community is important for us as politicians. Adding the community as part of the political and governmental process can only be of benefit to all. We want to affirm our desire to work with the community and with government in order to assist Canadians with disabilities to exercise their citizenship rights and their human rights.

8. An Ongoing Dialogue

This report has outlined our approach to the issues and, we hope, made some concrete and practical suggestions for the government to follow. We expect a response to this report that will reflect both its spirit and its content. In our eyes, this report represents a distillation of community and political values. We can only hope that those who are called upon to respond to us will treat our thoughts in the way that they were intended. We see this report as the beginning of a dialogue that, in fact, reflects the interdependence between Parliament, the government and the community.

We believe that the recommendations of this report should be reflected in whatever federal disability strategy is proposed or put forward by the government.

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1 Quebec did not sign the Social Union Framework Agreement. Therefore any reference to governments or joint federal-provincial-territorial agreements or activities excludes Quebec.

2 Quebec states that it shares the concerns raised in the In Unison report but did not take part in the development of the document. Any references to the provinces or provincial positions excludes Quebec.